http://www.uab.edu/n...genous-leukemia
and another interesting read, even though its not about us (Yet), its good to see progress being made:
http://www.bbc.com/n...health-35586834
Posted 16 February 2016 - 05:01 PM
http://www.uab.edu/n...genous-leukemia
and another interesting read, even though its not about us (Yet), its good to see progress being made:
http://www.bbc.com/n...health-35586834
Posted 17 February 2016 - 09:27 AM
Thanks for the article. The thing that really sticks out for me is the last statement.
"Support for the research came from NIH NCI grants R01 CA172447 and P30CA033572."
It just shows where the research really is. It isn't with the drug makers. But they are the ones that profit when public funded research leads to a discovery.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Posted 17 February 2016 - 11:27 AM
Thanks for the article. The thing that really sticks out for me is the last statement.
"Support for the research came from NIH NCI grants R01 CA172447 and P30CA033572."
It just shows where the research really is. It isn't with the drug makers. But they are the ones that profit when public funded research leads to a discovery.
I don't want to come across as defending drug company's - especially "big pharma", but research and cost in basic biology and the mechanisms in how our genes work is not the same as drug development and its cost. It's important to be sure, but it's not where the money is spent. The research cited above, for example, was done using grants in the amount of $25,000 up to $250,000. University research groups are the usual recipients.
To develop a drug will cost upwards of one BIllion dollars - to first identify compounds, and then develop the drug, test it to make sure that it both works (clinical efficacy) and that it doesn't poison/kill the patient. Hundreds of millions of dollars and more are spent on repeated drug failures (either don't work or are too toxic) for every success.
So the financial risk to the drug maker is large.
The real issue is how to lower the cost of drug development, increase competition so that drugs developed are priced based on a reasonable return and that the return on investment continues innovation.
It's all about making sure that innovation is encouraged and access is available.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 17 February 2016 - 12:39 PM
Gosh, TeddyB, those are great articles, especially the first one. This kind of info is what I've come to rely on with this discussion board, and I'm so afraid will be absent in the new format. LLS isn't going to scour the universe of research like CMLers do, and they won't disseminate stuff that's as not yet ready for prime time as this (mouse studies or Phase I trials, that sort of thing). It heartens me every day, a little hope for waging the fight for another day. Time stretches long between onc visits and the mind slackens and succumbs to fear. Every day I learn something from my fellow CMLers that bucks me up a bit. You wake up my mind and make me think. Otherwise, I would probably just drag my sorry rear into the onc's office and drearily accept whatever bland nostrum for my future he has.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 17 February 2016 - 02:02 PM
Time stretches long between onc visits and the mind slackens and succumbs to fear. Every day I learn something from my fellow CMLers that bucks me up a bit. You wake up my mind and make me think. Otherwise, I would probably just drag my sorry rear into the onc's office and drearily accept whatever bland nostrum for my future he has.
Ditto!!
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
Posted 17 February 2016 - 02:47 PM
Gosh, TeddyB, those are great articles, especially the first one. This kind of info is what I've come to rely on with this discussion board, and I'm so afraid will be absent in the new format. LLS isn't going to scour the universe of research like CMLers do, and they won't disseminate stuff that's as not yet ready for prime time as this (mouse studies or Phase I trials, that sort of thing). It heartens me every day, a little hope for waging the fight for another day. Time stretches long between onc visits and the mind slackens and succumbs to fear. Every day I learn something from my fellow CMLers that bucks me up a bit. You wake up my mind and make me think. Otherwise, I would probably just drag my sorry rear into the onc's office and drearily accept whatever bland nostrum for my future he has.
Glad you liked the articles
I get most the links i post from this page: http://www.cmleukemia.com/english.html
Its frequently updated with the latest CML news, and if im not mistaken its run by a fellow who is also on this forum.
I check it now and then, and try to post the most interesting stuff here, as i find the LLS boards to be the best place for CML discussion.
Posted 17 February 2016 - 03:34 PM
TeddyB - Thanks for the link - I have added it to my Bookmarks. (I can do SOME computer things ) There's a lot of good stuff there.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
0 members, 1 guests, 0 anonymous users